December updates!

Hi!

Keep your fingers crossed for me....taking Logan & Tyler down to Milwaukee tomorrow to get their turn to get their heart checked out. I also hope the roads are clear of snow or ice! It has been unseasonably warm this week and everything melted, but it was raining tonight and it will suck if it gets cold and turns to ice. My van is all gassed up and ready to go.

I had the book club Christmas party tonight....was a nice time! Lots of good food and conversation. I even read some of the book, lol. It was a short one this month: The Storied Life of A.J. Fikry by Gabrielle Zevin. So far so good, just an entertaining read. I would have read it long before the day of book club but I am working on a super interesting book: Dr. Mutter's Marvels: A True Tale of Intrigue and Innovation at the Dawn of Modern Medicine. http://www.amazon.com/Dr-Mutters-Mar.../dp/1592408702 It is worth the time to read it! It is fascinating, talking about how surgeries were done before anesthetics were around....and how he cared about infection control and having patients recuperate somewhere after surgery and not just sent out the door when it was done. So many things we just take for granted nowadays.

In the spirit of making things easier for us at Christmas....I dropped the bomb on my Mom suggesting that maybe on Christmas Eve that everyone could come over to our house instead of theirs. That didn't go over so well....I mostly said due to Caitlin not sleeping well in a bed not her own and that she needs to go to bed early (which is true!). It is just hard schlepping all the kids there and staying up late and having to go go again the next day. She called me the next day suggesting that maybe we could do Christmas on the 26th then at her house but then she wasn't sure about my sister and if she had her son or not that day (she is divorced). Well, I did call my sis and talked about it with her and then called my Mom the next day and said that we would try it on the 26th. Then we could go over there in the afternoon and then eat but still get home early for C. We will see how this all works out! I still said, well we are still just staying home on the 24th and everyone is welcome to come over and hang out here if they have no where else to go....that we would put out a spread of food, etc. It is all changing up this year also since my cousin had her baby in November and she usually comes up to stay over with her Mom but now she is staying in Madison and not coming here so her Mom is going there and they keep changing the day....a mess! They all usually would also come to my parents' house for dinner Christmas Eve. This was why I even thought to suggest changing it since they weren't going to be coming. Rocking the boat! LOL! We will see how this plays out in the end. Of course I have Rose's story of her hosting Christmas in the back of my mind....that would be my luck having the kids get sick or medical emergency when I just would like to have a relaxing time at home.

We took the kids to Brian's work kids Christmas party on Saturday night...it was awesome!! They rent out the Children's Museum and had supper for everyone and also even hired a magician for a magic show! All the kids loved it! Caitlin even had a great time! I was so glad we went. We usually don't. It was always too hard to watch all the kids, the museum is 2 levels and now the boys are older, they can run a little freer and not have us hovering right next to them. I made the older 2 wear a watch and we just said, check back with us at this time. It worked great. And the weather was nice too, it was 40 degrees so even though we had to walk a block from the parking ramp, it was just nice. I wish in the new year to have more times like that...good times all together. Here is Caitlin in her new wheelchair & tray by the fire truck: Attachment 4200

Okay, weird, this was supposed to post yesterday, but apparently was stuck in limbo and when I was writing up something new, it came up with "post saved content"...so I did and voila! Glad I don't have to rewrite, that is a big pet peeve of mine having to redo lost posts. Anyway! :)

Today went great! We were there (in Milwaukee) ALL day, appointment was at 12:30 and we didn't leave until after 4pm. All is well though, they are 'normal'...no further followup needed. Well, actually if Brandon's genetic testing shows connective tissue disorder, they may want to relook at the little boys, but I am not going to spend a minute worrying about it. It was a relief to know all is good for now! The roads were clear most of the way until I got halfway home...then the snow hit. It was the worst the last 2 miles home, I almost slid into the ditch at one intersection, but managed to bring it back before that happened. Hoping school is not closed tomorrow due to the snow!! I have last minute shopping to finish up.

Caitlin had an 'off' day today. She was ornery (best word to describe the behavior) at PT this morning. And at one point when PT laid C down on the padded table to do some stretching, C had the eye flutter and hands up type seizure. This seems to be her main seizure now. It was just a bit concerning to me since her speech seemed to be affected a little bit. She did this weird whisper instead of her normal voice as we were almost done....also like she could not find the right words to say also. This has happened to her before (with the speech being affected), when she got the flu, so I am hoping she is not coming down with something. Since it was a half day at school today, I just kept her home from school to rest. Which really was getting dropped off at Grandma's who lives right off the highway I take to go to Milwaukee...nice & convenient! I am not sure if she got a ton of rest being over there, but I know she got pampered I am sure!! She seemed ok this evening when I got home so we'll see. She kept asking to stay home tomorrow, which I said, "NO!". :)

Well, gotta go make cupcakes for Tyler's half birthday, which really was on Saturday...I forget about this every year! School celebrates summer bdays on their half-bday. He came home Monday with a bday card and treat from the teacher and he was asking me to send a bday treat in today but I talked him into Wednesday since that will be a whole day. I think I would rather celebrate his summer bday a month before or like in april or may...closer to the real day. Just another pet peeve of mine! LOL! Too hard to fit this in with Christmas stuff going on...

Hi Lisa, Wow you are so busy as always - how can some mothers work outside the home I would like to know? There is just so much with your gorgeous children - three active boys and Caitlin would keep an army busy. I'm so glad that the boys are fine - what a relief! And I'm sorry that Caitlin had a seizure, I guess you saw it coming. Poor sweetie.
Re your Mom, it's time to begin to shift the family a slowly but surely. Caitlin is getting older and bigger. Everyone will have to adjust to that. Christmases will change. Your Mom won't like it and there might be some other people in your family who won't either. I think it's because on that day, the traditions keep out the fear and the bad times, don't you think? It's a day of magical thinking and imagining the best of everything. I wrote a blog post today about our Christmas - my Mom can't come down here anymore and Nick's pain means that he may not get out to our family get togethers between Christmas and New Years. We will either split up the family or we'll just stick together with Nick at his place. We'll work it out. But over time, it changes for sure, based on what we need to do. Sending much love to you and your wonderful family - Merry Christmas my dear friend!!!!

Great news that Logan and Tyler have normal results. I'm grateful that you made it through that snow storm safely. I do not miss those days of sliding around on icy or snowy roads. Prayers for safe travels for you all.

How is Caitlin feeling now? Any more seizures? Prayers that you are all healthy for the holidays and beyond.

I'm sorry that my story of my first hosting spooked you! The fact is that we were going to the ER or the HMO clinic quite often at night or early morning, as Michael had pneumonia repeatedly. He was aspirating during seizures and while eating. And we typically have been in some health crisis at the holidays (name a holiday, and we've been in the hospital at least once on that holiday in the last 45 years ...).

Tradition is wonderful, unless it becomes cumbersome to implement for family members. Sometimes new traditions need to be initiated. One main factor in making changes is the aging of the family member, who hosts the holiday. In our family, Christmas was at my grandparents' house, until they became too old, and then it was my parents' turn, then my uncle's turn, then my turn. And I had to beg to have my turn, before my Aunt and Uncle were ready to retire from hosting, because it was easier for me.

And only then did it dawn on my family that, like you, schlepping the boys, all of their stuff, the presents, and the food was about a thousand times more difficult than hosting the occasion!

When my boys were tired, I carried them upstairs to their own beds, and the family continued to visit. So much easier!

Better for the boys. Better for me.

That's the best way to approach this with your mom. You're not rocking the boat. You're keeping YOUR boat on an even keel for the sake of your precious cargo.

Do what works best for you and your family, Lisa. Eventually, everyone will adapt to the change.

Wishing you peace and joy throughout the holidays ~

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Donna, yes sometimes I think about getting a (paying) job and then I look at my calendar. I just filled in the kids' activities for the new year. I am booked solid through March already! I am not sure how I could ever fit working into all that. So glad I have the luxury not to have to. Though I am by no means a lay around the house type person! I read your blog post about Christmas. :) I agree with how it is somewhat magical thinking...I went shopping with my Mom the other day and we were talking about Christmas 'back in the day'. She was saying how when they were little, her Mom would put up the tree on Christmas Eve when they were sleeping and they would wake up and the tree would be there all decorated and how magical that was. When I was little, they would wait until about the week before Christmas to put it up, and it was a live tree, not artificial. When I moved out on my own, the first year, I worked an extra night at my bartending job, took my tips to the store the next day and bought a fake tree that I put up the very same day! (like pretty much right after Thanksgiving!) LOL! Yes, the traditions do change over the years!

Rose, I wasn't too spooked, mostly remembering all my own holidays...one Christmas Eve we discovered Caitlin had a groin hernia...it was bulging out a LOT and we got to spend it at the doctor office. She was only age 2 for that so I can't really remember if they fixed it surgically right away or if we waited a bit. At least I know the drama fades a bit over time and I can look back and not feel stressed about it now. As for her seizure this week, I know now that she was coming down with something. I did suspect this a little just based on how bad the seizure activity seemed. Just a really bad cold but enough to lower her seizure threshold. She is worse than a man when she is sick though! I gave her a nice steamy shower this morning which helped (and helped me too since we all kindof have it). We had Sunday School Christmas practice and then my Dad's side (all his bros & sis and families, so big party!) Christmas lunch at my aunt's house right after. Since she was so 'off' from her cold, I told the lady in charge of the xmas program that I am going to keep Caitlin out of it this year. Really by age, she is too old. Brandon is the oldest kid in it, he is good at reading and they needed some more kids to do that so he was rounded up for that. He is also doing a bell duet with his friend, they both do percussion at school band so they will play The First Noel on their xylophones. The xmas party at my aunt's was fun. Most of the cousin's and their kids were there too so all my kids had a blast playing with them, and of course eating! Caitlin ate a ton of food even though she isn't 100%, which I was glad for. I had thought about leaving her home with Brian but didn't really want to do that. He is a worrier and I think having him stay home would have made him worry more about being at a party where there is drinking and make it harder in the future for him to attend, does that make sense? Caitlin's kindle battery ran out but my cousin's little girl (4th grader) shared her ipad with C, it was cute to see them play nice together. They were going to tree hop to some of the other houses (my dad is 1 of 5 sibs) but we decided to just go to the Mall after and see Santa and then go home. Too hard to pack the kids up to go to multiple houses. I know one my aunts felt bad that we weren't coming and I felt bad not going there since she is really great about making Caitlin feel involved and doing anything to make it easier for us....but since she wasn't 100% today, I didn't want to drag C all over town.

The visit to Santa at the Mall was not too bad, it was busy, but the line moved fast and I had Brian along so that helped to keep the boys in check. I have now had the kids' picture with this Santa for 14 years now! I can't believe he has not retired yet, but I am glad too since he does a great job! Santa pic2014c.jpg That is the only good thing, with the wheelchair, we park right by the door of the entrance where Santa is so we were in and out in about 30 minutes even with the long line.

My Mom did agree to having Christmas dinner at her house on the 26th...it worked out good for my sister too with custody stuff with her son. That way she didn't have to fight over who gets him and when. I am hoping this works out good...and they are all going to come over to our house on Christmas Eve. I am looking forward to that! Hopefully this can be a transition to Christmas Eve always being at my house. :) I have to say, at least the hauling of stuff was nicer today with the new lightweight wheelchair! My back is LOVING that!! I am looking forward to the January doctor appointments so I can weigh it and find out exactly how light it is. My guess is 30-40 lbs lighter, pretty significant! Now if only my bathroom scale would show that much weight loss, lol.

Hope everyone is having a good weekend and wishing you all a Merry Christmas!!
Lisa O.

Great news about the changes in traditions, Lisa! And I hope everyone in your house is on the mend soon - Nick had a really terrible cold last week and his seizures were worse too. Thank goodness it didn't turn into pneumonia. One of his main daytime workers got it though and is out now with strept throat. It's really going around. Lisa, you are an 'extreme Mom' - the hardest working kind! I'm not sure how you fit in so many activities and the medical stuff too. I am a huge admirer!!!!
Wishing you and your family a very Merry Christmas from all of us - one day I want to visit (or have you visit us!)
Sending much love,
Donna xox

What a great Christmas gift to Caitlin and you that w/c is! I'm so happy for both of you, as you will both notice a difference in how your bodies feel.

Out of necessity, I worked outside of our home for 15 years. I had to take work home and work on the weekends to make up for time I missed at work to attend IEPs, clinics, take the boys to the doctor, therapy, ER, hospital. Saved all of my sick days for my boys, none for me. I often took my work to the hospital and worked at Michael's bedside. No computers, cell phones. The way I managed to do all of that was through sheer determination, because I had to earn a living to support my kids. Also I was very young and fit.

Let me just say succinctly: It was hard.

The best thing that happened to me in those days was being laid off and finding the IHSS program so that I could stay home and be a full time Mother and Careprovider for my boys. And when that happened, their health improved, and my stress level went down a thousand percent.

Oprah says that being a Mother is the most important JOB in the world. She is correct. And you, Lisa, are stellar in your position as a Mother.

In England and Canada (and other countries), December 26 is called "Boxing Day," and families do gather on that day (in Jim's family, they consumed Christmas dinner leftovers). So, you can tell your Mom that the 26 is an official holiday throughout Europe, and that you've all become European!

I think Christmas Eve at your home will become a tradition, because you have already begun to make it so. And I'm thinking you'll be glad you did.

MERRY CHRISTMAS!

((((((Donna)))))) ~

I hope that Nick is feeling much better, and that he wasn't exposed to his caregiver's strep. As I mentioned to Lisa, you, Jim, and Natalie would be wise to take extra C, D, and Zinc. During the flu/cold season, we take an extra 2,000 iu of Vitamin D3. It boosts the immune system.

I read your Christmas blog, and you've really shaken up the long standing tradition for yourself during the holidays. Traveling 3 days in a week is a lot. And you start baking in October?! I am in awe of you! I think about Christmas in October for a few minutes, and that's it. Activism as entrepreneurship is an interesting concept.

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Christmas Blessings to All ~

(((((( HOLIDAY HUGS TO ALL )))))) ~

Michael's room is decorated with holiday linens and glittering candles in the shapes of Christmas trees, snowmen, and country houses. As always, Angels abound throughout. Tomorrow, Jim will set up the tree in Michael's room. The lights usually take hours to get working. So we have strands of lights to supplement.

We will likely decorate the tree on Tuesday.

Jon's room is partially decorated, and it's beginning to look a lot like Christmas. Tomorrow, Jim will hang Jon's ornaments on Jon's wall, and our stockings, and a string or two of lights. Jon's small wire Christmas tree is on the shelf, which Jim built last year.

A few things in the kitchen, and the dining table is bedecked. That may be the sum total of my decorating this year, unless I get a second wind. Doubtful.

Are you thinking, "Gee, a tad late, Rose?" If so, then you are quite correct in that thinking. The older I get the longer it takes me to do this stuff. I can only be on my feet, bending, stooping, stretching, etc. for so long, before I need to sit down to rest my back, legs, knees, and ankles. I keep thinking that I'm too young to feel this old. But, apparently, I'm not.

Last night, out of the blue, Jon's belly became distended, and he began gagging, choking, and finally vomiting. His gut was rock hard. His bowels were moving well. He was peeing like 2 race horses. We have no idea what brought this on. It was a long night. He finally fell asleep at 4 a.m. and slept until 1 p.m. today.

We decided to adjust Jon's trache collar, in case it was loose and causing air to enter through his stoma. That seems to have helped him, as his coughing has been reduced significantly today. He received less G tube formula as a result of last night's episode, so we're hoping that will also benefit him today.

His G Tube is about ready to be replaced. We were hoping to make it to April 2015, but it looks like we'll be calling our dear GI to come out sooner. We've replaced the port twice. The first port was too flimsy, and it leaked. So instead of changing linens and shirts due to leaking urine, we were changing them due to leaking formula.

The second, more rigid port, which we placed today, is cumbersome and doesn't accept the 60 cc syringe very well. Tonight, while giving Jon his seizure meds, the syringe fell out of the Gtube port, and Depakote poured all over Jon. I have no idea how much of his dose went into his tube before the syringe popped out. But his shirt was soaked. I finally settled on 6 cc to supplement what was lost. It's just a guess. I could end up overdosing him or underdosing him. How do I measure what spilled onto his shirt? I can't!

I figured out that I needed to use a different syringe, and hold the tip of the syringe in the tube, as I pour in the water and meds. I'll have to instruct Jim on this tonight, before he gives Jon his nighttime meds. DOSAGE of these meds is everything! And we are so diligent about getting it just right. We can't have any more accidents with meds.

Somehow, we will have to muddle through until after the holidays with the Gtube issue. Experience tells us that this is the wrong time of the year to need medical attention.

Finally, I've decided to share our 2014 Family Christmas photo, which Jon's nurse took a couple of weeks ago, when she visited to change Jon's catheter. This photo is the best (and last) of four attempts! It's difficult to capture Jon's smile on camera, because he doesn't hold it for long. So, this is Jon after he's smiled. His "Popeye Smile." He's winking at you!

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

I think all of us here perform feats of strength and what better place than here to air our grievances? :) Though my biggest one this year was the wheelchair and I can't really complain too much about that anymore. It is so much better already, but still needs a few tweaks. They are coming to our house on the 30th to make a few adjustments to it. Our PT wrote up a list of things to change on it. Then, hopefully, it will be perfect. I think Caitlin had another growth spurt...I hope she doesn't get too much taller! I am 65" tall and she is now about 53".

Your photo turned out very nice Rose! Believe me, I know how hard it is to get everyone to smile all at the same time! I have given up on that actually! I tell the Santa place every year, just snap the shot, I am not picky...I don't want to be the one holding up the line. I actually edited it since they included Caitlin from head to toe and I've noticed just this month that she has a lot of ankle showing (pants too short, growth spurt!) and she didn't have shoes on that day. So glad for photoshop to crop it better.

Glad you were able to do some decorating. I did a lot less this year too, partly from the dog, and partly from my mood this whole fall. I just finished the tree today, finally. I did get the kids' trees down (little 2.5 ft ones) and put them in their rooms. But it is nice that they are a little older now, the boys' decorated their own. I had their ornaments set by their tree so when they came home from school today, they could spend a little time decorating. They got a kick out of that. I did Caitlin's tree before she came home. This sunday at church, the pastor handed us a box and said it appeared under the tree. It said, 'to Caitlin O, from Santa'. She opened it up and it was this beautiful porcelain doll! I have no idea who gave it to her, but how sweet! And she had told Santa at the Mall that she wanted a doll when he asked what she wanted. So I stood it up next to her little tree. It looks neat! She was excited to see it there when I put her to bed tonight. 027.jpg

Hope Jon is having a stable day today and that Nick is feeling better and doesn't catch the strep throat! I think all the boys are sleeping finally so I am off to wrap! Santa comes a day early at our house so that the kids can have a day at home to play with their toys. The next few days will be filled with craziness....

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